Raising kids with disabilities comes with its own set of challenges and reasons to be grateful. Because this is EA/TEF Awareness Month and our son was born with EA/TEF, my top ten perks of raising a child with disabilities will be slanted in that direction.
Years of experience have shown me that disability parents, whatever their child’s disability might be, have much in common. I hope these perks resonate with you, make you laugh, make you cry, and increase your gratitude.
From @jamesnft on Unsplash
My Child Was Made by God in His Image
When I grieve the loss of my dreams for my child––a true grief to work through––the knowledge that he is exactly who God made him is a comfort for which I am always grateful.
My Vocabulary Expanded
As an educator, I consider expanding my vocabulary to be a positive development. So many words entered my vocabulary after our son was born: barium swallow, GI specialist, stuckies, feeding tube, Nissen fundoplication, dilation, and more. How can I not be grateful for them?
I Consider the Ability to Swallow Marvelous
Until our son was born, I thought swallowing of a normal bodily function. After he was born, I saw it as the marvel it is. And when his swallowing challenges diminished, my gratitude knew no bounds.
I Appreciate Medical Advances
The EA/TEF surgery protocols have changed drastically since we became parents in 1982. From the introduction of anesthesia during newborn surgery to dainty button feeding tubes and much more, I am grateful for today’s newborns being treated more humanely and effectively than ever before.
I Appreciate Medical Professionals
These are the people who saved our child’s life. They do all they can to improve the quality of our kids’ lives. Their hearts break when they don’t save the lives of children in their care. Getting to know these people like them was more than a perk. Their presence enriched and continues to enrich everyone in our family.
I Discovered My Own Strength
To put it another way, protecting and advocating for our child put me in touch with my inner Mama Tiger. Knowing she’s in there gives me confidence every single day.
My Faith Grew
There’s no in between when parenting kids with disabilities and special needs. A parents’ faith either increases or decreases. Mine increased, not because of anything I did, but because of the Christians who gathered around to support us and evidences of God going ahead of us in this difficult season.
I Became Part of Two New Tribes
I joined the tribe of other parents raising kids with a wide range of disabilities and special needs, including a high school classmate who reached out with encouragement and advice shortly after our baby’s birth. The other was an EA/TEF Facebook tribe someone mentioned nearly thirty years later. Though I would never have applied to be in these tribes, they have introduced me to people who understand my experience completely. How wonderful is that?
My Career Changed
My original career plan was to teach for thirty-some years and retire. Instead, I left the profession after year twenty-five to become a writer and speaker. My books, whether non-fiction or fiction, have a disability connection. I loved teaching, but love writing and speaking more. What a perk to have a career that feels like play not work!
My Son Is Alive.
His early days weren’t easy for him or us. But at the time of this writing, he is forty-one. Had he been born fifty years earlier, those forty-one years would not have been. This is not the case for every family who welcomes a child with disabilities. Many are grieving today, and I grieve with them. God answered our prayers in one way and theirs in another, and I don’t know why.
Even so, I trust in the God and Father described in Romans 8:32: He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things?
Our God is a Father who knows the anguish of parents who have outlived their children and the joy of parents whose children are delivered out of death into life…if not in this world, then surely in the life to come. What a great comfort this is!
Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Dance!, the third book in the West River cozy mystery series, which features characters affected by disability, was released in October of 2023. The audioversion of Book 1, See Jane Run!, was released in November of 2023.
